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AUTISM, SERIOUS SCIENTISTS AND THE WACKOSPHERE

NOTE: In keeping with the content of this post, we will not allow additional comments that are anonymous or use a pseudonym from another blog. We welcome those of you who would like to post under your own name. Thank you.

By Mark Blaxill

A recent episode of the popular television show CSI:NY made the entertainment news headlines with a novel plot concept. In a clever (and probably lucrative) cross-promotion with the online game called Second Life, the show’s writers devised a story line in which a conflict between characters in the so-called “virtual world” of Second Life spilled over into the real world resulting in a sequence of murders and high speed chases that criss-crossed back and forth between the virtual world of Second Life and the real world of downtown Manhattan. As a fictional murder-mystery about a virtual world, it was fun to watch (I confess to being a CSI junkie myself). But the plot line stuck in my head for a different reason; in their ever-voracious search for catchy plotlines, the episode had an eerie air of prophecy about it. The main point was this: out of control game players in the virtual world killed real people. After a point, their fantasy life was no longer a game. It crossed the line into irresponsible behavior.

The rapid evolution of the Internet has created a host of fascinating, exhilarating and occasionally despicable new things. The Age of Autism is a blog and we’re proud to be a part of a new phenomenon called the blogosphere. The blogosphere is, by and large, a dynamic and democratizing force. Most of the time, bloggers are just another form of chat room, but in their most advanced form, blogs have introduced a new and vital form of journalistic competition to traditional news outlets. Competitive news blogs were reviled at first -- the audacity of Matt Drudge to talk about oral sex as if it were news! --but they have now become a force to be reckoned with. The best of these new journalists take the content of the traditional newspaper and remix it with far lower overhead and far greater speed: lots of opinion, a great deal more diversity of voices, a looser style and — in the best blogs -- some plain old-fashioned investigative reporting, too.

But as one might expect with any new form of cultural expression, there’s a bizarre variant of the blogosphere out there. It’s a strange hybrid: it looks like a regular low end blog, based almost entirely on opinion, a dressed up version of the typical online discussion groups and chat rooms. But upon closer inspection, it’s a mutant of a specific kind, one that more closely resembles Second Life than a chat room: in other words, it’s a game masquerading as real life. Like an online virtual world, its participants are not real people, they are avatars: a game player’s visual representation in the virtual world. Most of the time, avatars don’t reveal their real world identity and play their game as a real person hiding behind a mask. In a disturbing way, this new hybrid has found its way into the debates and controversies around autism science

Like the game players in Second Life, in the autism world avatars often carry colorful names. There are “oracles” and “divas,” cartoon characters and doo-wop song references. Invariably they are aggressive and, with unfortunate frequency, they carry their games into the real world. Indeed, many of these avatars want to enter directly into the scientific controversies surrounding autism and mix things up. Often connected with the so-called “neurodiversity” movement, many of these game players seem to define themselves by their own “autism” (although they seem plenty verbal and show a skill for shading the truth that our autistic kids would find many levels beyond their capacity to deceive). But unlike people that engage in the blogosphere using their real names and identities, these avatars all have one thing in common.

They’re cowards.

Most of us have learned the old saying, “If you don’t have something nice to say, don’t say it.” Of course, few ever live by that motto, and frankly the world needs people to debate and disagree, and sometimes that happens in ways that are just plain disagreeable. But when real people make the choice to express criticism or anger, they are constrained in their choices by the knowledge that their personal lives and reputations stand behind their words. If they make errors, or overstep the norms of civil society, their real world lives can suffer. When they ask to be heard and respected in a debate, their words are subject to the filtering we always apply when evaluating a comment from a real person. Is this person a reliable witness? Do they have a personal interest in a given outcome? Have they made valuable past contributions? In short, is this person a serious contributor or a wacko?

Without the normal constraints and filters that apply to real life, even when it plays out over the Internet, the nature and quality of the discourse degrades. In a very real and noxious way, we’re seeing this degradation playing out in the autism world. I propose a name for the mutant child of the blogosphere, the one that’s populated by cowardly avatars with no real life against which others can calibrate their contributions. Let’s call it what it is, not the blogosphere, but the wackosphere.

I’ll come back to the wackosphere in a moment. As AOA readers know, we’ve spent some time here covering the recent work by Cathy DeSoto and Robert Hitlan (MC Desoto and RT Hitlan. “Blood levels of mercury are related to diagnosis of autism: a reanalysis of an important data set.” Journal of Child Neurology. November, 2007) in revealing a statistical error in plain sight in the work of researchers from the University of Hong Kong. I described the highlights of the original paper by Patrick Ip (the first author), Virginia Wong (the corresponding author) and their colleagues previously (P Ip V Wong et al. “Mercury exposure in children with autistic spectrum disorder: case-control study.” Journal of Child Neurology, November 2004). But after reading the more detailed discussion by DeSoto at her Web site (click HERE), I found myself both impressed by DeSoto’s careful work and concerned by what she has been forced to cope with. So I decided to go back and dig a little deeper into the Ip et al paper (for a detailed discussion of the errors in the paper click HERE). In the process, I developed an even greater appreciation for both the depth of the errors that Ip and Wong made and the importance of DeSoto and Hitlan’s efforts in exposing those errors.

DeSoto and Hitlan deserve kudos for their careful attention to detail and their respectful diligence in correcting a scientific error. As you might imagine, it’s not a pleasant job to point out the errors of journal article to the journal’s editor, especially when the author in question is a member of the journal’s Editorial Board. But DeSoto and Hitlan have received important peer recognition for their work. Their article was listed, for example, in December 2007 as a “hidden jewel” by the group known as the Faculty of 1000 Biology.

You might ask, what does all this have to do with the wackosphere? Well quite a lot actually, because if you go to DeSoto’s Web site cited above, you quickly see that her entire reason for posting this Web site is to respond to specific critics of her work, almost all of them emanating from the wackosphere. She spends a great deal of time defending her work, and indeed her personal reputation, against the attacks of a single anonymous critic, in other words an avatar. This character has, in fact, launched a full-fledged and vicious attack on DeSoto’s work, her reasoning skills and personal character and has managed to enlist fellow travelers, both avatars and real people to join with him in piling on. He and his buddies get most of their facts wrong, they accuse DeSoto of being non-tenured (she has tenure), they claim that DeSoto’s criticism rests entirely on whether or not a one or another statistical test is correct (it’s a side point), they claim that she’s a “junk scientist” and a laughing stock in serious scientific circles (libelous and untrue, but hey, we’re anonymous so who cares?). More broadly, since they are unconstrained by the rules of real people in fair arguments, they play cheap rhetorical games that grossly distort DeSoto’s arguments (hey, it’s just a game, so why not play just to win?).

DeSoto lays all this out in painstaking (and painful to the responsible reader) detail. But at the very end of her lengthy self-defense, she raises and responds to the most important question of all.

Q. Why are you taking the time to write all of this? Who cares what a blog says?

“Unfortunately, the main bloggers of [censored wackosphere site name] have taken the time to respond to almost all of the other blogs about this article (there are a LOT, dozens at least). The [deleted] "critique" has been quoted all over (today I saw it on a regular news Web site). People who read it will certainly be misled, and I care. Furthermore, I did not want my silence to be taken as any sort of concession that what is being said about our article is rational or correct. … I teach graduate students; I cannot read falsehoods about my own study knowing they are misleading future scientists and not at least try to shed some light on the matter.”

In short, DeSoto feels obligated to spend her own time responding to the bullying of an anonymous coward because the blurring of the boundary between the real world and the wackosphere of autism avatars has real world consequences for her. For a serious and conscientious scientist who has done little more than stand up for quality, indeed who has given true meaning to the spirit of peer review, this is a bizarre form of punishment for the maintenance of high standards.

In a related point, why am I bothering to call attention to this episode anyway? Why not treat bullies and cowards the way they deserve to be treated, by ignoring them? In this case, there are two reasons. At one level, I raise it in order to call attention to the injustice. People like DeSoto deserve support from autism advocates and scientists alike. We need objective and careful analysis of the controversial questions surrounding the role of mercury in autism. Avatar attacks simply waste the time of valuable people like DeSoto and put them at risk of unwarranted damage to their reputation.

More to the point, as modest as this specific example is of the wackosphere affecting real life, unlike the story line on CSI: NY, it’s neither a fictional event nor an isolated incident. In fact, at a deeper level, there’s a widespread pattern of scientific intimidation and censorship underway in autism science that relies on a wide range of attack dogs, from the wackosphere, to mainstream journalists to the leaders of prestigious government agencies and institutions. AOA recently posted a link to the misconduct trial of Dr. Lonergan and her eventual vindication. The Wakefield Inquisition continues as Andrew Wakefield’s reward for listening to autism parents and helping our kids has degraded to the point that its real purpose has been revealed: it’s a heresy trial. And I have personal knowledge of several more serious acts of intimidation and persecution directed at practicing scientists, acts that those scientists have asked me not to make public. At least one of these was initiated by an avatar from the wackosphere.

In short, we need to call out the avatars from the wackosphere what they really are: wackos and cowards. We need to defend some minimum standards for how people are permitted to participate in a public debate. At the top of the list of these standards should be this: if anyone wants to participate in a debate about autism, put your real self on the line: your real name, your actual body of work (if you have any) and your professional accomplishments and reputation. Put the things that really matter -- your family’s future and your personal career prospects — out in public for everyone to see if you want to exercise the privilege of participation in civil society. If you’re willing to do that, then you have a right to be heard. If you’re not, then you should go back to your game and keep playing with yourself. Let serious people do serious work.

This is not a game, it’s serious business. Children’s futures are at stake. Cowards need not apply.

As it happens we both had blog names but neither of us made any attempt to disguise our identity. I, at least, had registered my blog name in the Guardian on the spur of the moment, and have often regretted not just putting down my real name since.

What drove me crazy about him was not that I did not know who he was but that his technique seemed to be to prolong the discussion endlessly by apparently acknowledging a point and then coming back as if it had never been made. I would not have classified him as a coward, but I did think he was prolonging the exchange unnecessarily, acting in a way which would confuse outside readers, and demanded absurd levels of effort to respond to. Otherwise, he was a gentleman.

Use a pseudonym to protect one's family? Understandable. Use a pseudonym as a professional shield? Reprehensible. But that's one of the downsides of capitalism. Transparency is anathema and ethics are flushed down the toilet, floating amongst antidepressant residue.

Regarding Kevin's comment about Dr. DiCicco-Bloom, I'd be interested in seeing a flowchart "family tree" showing the interconnection between the CDC, vaccine manufacturers, university researchers and public health administrators. From what I've been reading over the years, quite a network of graft and mutually beneficial misinformation.

It's way past time to start turning over these rocks and uncover the slime beneath. Too bad that investigative journalism in the mainstream media is under a Do Not Resuscitate order from their primary revenue sources.

You say "Because their position is so tenuous and because there is no legitimate scientific rationale for it, their only fallback it to attack the person. Pseudonyms make it more difficult for them to attack the person."

As I have read many the blogs and website comments on vaccines and autism over the years I have to say the biomed commmunity has much more civil discussion and well reasoned debate than that of the "pro mercury" crowd.

If responding to someone elses statements is "attacking", what is it when your side does it? And just because YOU do not agree with a study does not mean it has "no legitimate scientific rationale".

You say Pseudonyms make it more difficult to attack that person, we say it makes it more difficult to have a reasonable debate.

Pseudonyms give people a strange sense of power I think, and that goes for some individuals on both sides of the vaccine issue. If you look at the individuals who post with their actual names you will see that the disscussion is reasonable.

I stand by every comment I make on any blog and I am proud of what shows up when my name is "googled". (thank goodness it does not go back to my childhood though!!)

Jonathan,
I called people who make unfounded attacks and don't use their real names cowards. Since you use your real name here, you shouldn't take the criticism personally. For those of your friends who choose to promote confusion and discord, if the shoe fits, wear it.

I have no interest in debating you or your friends. Your work is simply trivial and unimportant. If you disagree and think you have an important and valid critique of DeSoto's work, feel free to submit it to the journal editor.

More to the point, you have taken personal pleasure in advancing ideas that harm my child. You have described yourself with glee as "an evil ND enforcer." In an open society, you have every right to express those views in open venues of your own or those that will accept you.

Well...this was just so interesting to read! I like researching about slime and biofilms, toxins and mercury but this was equally good. Somehow it was familiar,,,yes..the pathogens/metals trying so hard to take over, to infect,to cause disease but we are outsmarting them and eliminating them by exposing them for what type of germ/contaminant they are.

My last and identical comment seems to have not popped up. I will try one final time.

I one of the authors of the blog critique DeSoto & Hitlan responded to and whose name you delete in your quote of D&S.

I would like offer some corrections of information you post here.

1) We did not call D&S junk scientists.
2) We did not get most of the facts wrong, as you claim. We made 4 errors of fact out of a great many issues discussed. When the errors
were pointed out we acknowledged them, and offered am erratum.
3) The use of a one-tailed vs. two-tailed test is not a side point. One gives you a statistically significant finding, the other does not. That is as relevant as it gets.
4) We do not claim that D&S are a laughing stock in serious scientific circles.
5) We do not use straw arguments to misrepresent D&S arguments as you claim.

Mr. Blaxill, you do not deal with any of the issues we raise, including some fairly serious mistakes we noticed. Not a single one. Instead you call us wackos and cowards. We offered specific criticisms, you offered personal insults. I will leave it to your readership to decide what this means.

If you read some of my previous comments on this site, you will see that my appeal for “respect and fairness” have been issued to individuals on both sides of this issue.

(Look in the January archives for “Grinker’s Stinker: His Wife Runs the IACC” as one recent example.)

Unlike you, I don’t automatically classify another parent who doesn’t agree with me as a “foe” and I believe it’s this type of mentality that causes most of the infighting problems within our community.

I have no problem with people sometimes posting anonymously. Sometimes people wish to share personal information, or for other reasons they would like to discuss an issue without leaving a trail that is forever there for the world to see. But, as with many things, I feel there is a matter of degree. Someone like you, Orac, who professes to be such an expert, should be proud to say who you are as you spout so many reams of supposedly objective scientific information.

I do not have time at the moment to search for all of your posts and try to argue the scientific pros and cons. Instead I will just respond to this post as an English major and say that your tone, as always, is extremely hostile and filled with venom. I don’t know how you can pretend to be an objective scientist on these issues when you cast so many emotional, inaccurate aspersions on those who disagree with you.

The term “antivaccinationist” is propaganda. Parents are concerned about:
- the cumulative effect of the very high number of vaccines given to infants at a such an early age, when the immune, digestive, nervous, and detoxification systems are all so immature and in the process of development, and
- the toxic ingredients in vaccines which have not been adequately tested for safety, and
- the cavalier attitude of government agencies (e.g. CDC, FDA) and medical organizations (e.g. AAP) to the many credible reports of adverse effects following vaccines (e.g. seizures, autistic regression, IBD).
This does not mean that we are anti-vaccine. It means that we think the current vaccine system is harming many children and needs to be revamped. Weighing of risks and benefits needs to be done in a much better way. Problems must be researched and fixed instead of just being denied.

When people who are pro-vaccine-safety encounter criticism, our “first inclination” is not to “out” our “opponents”. The first inclination of people such as Mark Blaxill and JB Handley is to provide scientific evidence to support their views, and they do an excellent job of this.

Unfortunately, people such as you are blinded by prejudice and don’t read about scientific evidence contrary to your viewpoints with an open mind. And people like you have no problem with summarily dismissing the many, many accounts of vaccine injury. These accounts exist from times before this kind of issue was in the news. Many of these accounts are told by parents who were not aware of any of these issues until they saw their own children affected. Your cavalier, close-minded disregard of parental reports is extremely arrogant and cold hearted.

Your posts are filled with spite and narrow-mindedness. You are living in your own world. To you this is like a big electronic game where you just want to win.

And don’t tell me that any concerns about vaccine safety are outweighed by the health benefits of vaccines. I grew up at a time when I and all the kids I knew came down with measles, mumps, German measles, whooping cough, chicken pox, and the flu – and I don’t know a single person who suffered lasting effects. Yes, these diseases can have rare complications, but how do these complications compare with the harm from vaccines? We don’t really know, because the “experts” refuse to study vaccine complications and prefer to just deny that there is a problem. A comparison of health outcomes in vaccinated and unvaccinated populations could provide some good clues here, but officials at the CDC are afraid to so such a study.

The Point: IF you really want to remain “anonymous” in order to “protect your privacy” then I suggest you do one of two things, either:

1)Don’t post at all (see Orac’s comment below – seems you can be “found out”) or

2)Present your points in a civil and respectful way – as you would if your real name was behind it.

One of Mark’s main points in his piece is when a person assumes “an identity” they are less likely to weigh their words because there is no incentive for them to do so.

In your original comment, you used the word “hysterical” in conjunction with the words “toxic talk” – that is very disrespectful to me and many other parents as well.

Seriously, if you were discussing this topic with me face to face – right now – would you be that crass to call me “hysterical” to my face because I have a different opinion than you regarding this issue?

I noticed in your second comment you reworded your original “hysterical” to “mis-guided beliefs” BUT ONLY when you were “called on the carpet” for it.

Bottom Line: Next time, please remember Woody’s (Toy Story) admonishment to Sid when dealing with fellow parents: PLAY NICE.

The problem is your mis-guided "beliefs" are having a detrimental effect on autistic people and society as a whole. I am not going to completely parse your comment, as you did with mine. I was merely explaining to Mark Blaxill why people prefer to remain anon. BTW, I don't have "an image" and I don't really even know what you mean by that. I sincerely want to protect my child from all this damaging talk about toxins and damage. And that is all.

Silly people Especially you, Mark; your recent discovery of the blogosphere is on par with a sudden realization that MP3 players are a great way to play music, even though the iPod was introduced more than six years ago. Blogs have been around several years.

Be that as it may, why is it that an antivaccinationist's first inclination when encountering serious criticism (and make no mistake, beneath all the sarcasm is substantive criticism based on science) is to "out" their opponents? I've speculated about this before. Based on my experience, I've come to the conclusion that at least one true mark of a crank, particularly medical cranks but certainly not limited to them, is that they are obsessed with who the opposition is. Pseudonyms drive them crazy. When they find someone posting material refuting their pseudoscience to Usenet, discussion boards, or a blog under a pseudonym something that criticizes their views, their first reaction is to try to unmask that person, not to refute their criticism. Because their position is so tenuous and because there is no legitimate scientific rationale for it, their only fallback it to attack the person. Pseudonyms make it more difficult for them to attack the person.

Let's just put it this way. Nearly three years ago, a certain unhappy alternative medicine maven spent a lot of time Googling and managed to figure out my identity. He then sent threats of legal action to my Department Chair, my Division Chief, and the Director of the cancer institute where I work. I'll admit that it caused me some significant consternation, but all of them ignored it. My Chair, in fact, laughed it off and mocked the idiot who did it. However, in a less understanding environment, the tactics of "your" side are a concern and a legitimate reason to post under a 'nym, as are people like J. B., who's known for cybersquatting variations on oracknows domains.

One also wonders what you think of members of "your" side like John Best, who drove Kevin Leitch. The day I see you criticizing John Best for his vile behavior. I might take your ludicriously self-righteous pontifications about anonymity somewhat more seriously than the joke they are.

By the way, I realize that you probably won't publish this comment; so I'll also post it over at Kev's blog in his post that's making fun of you for this.

“I don't want his/her name or our family name to show-up in anything related the hysterical 'toxic talk'.”

Reading this, it seems to me like you’re more interested in protecting your “image” than your privacy.

First, you should be able to say what you need to-- without using your child’s actual name.

Second, visiting a website and posting a comment doesn’t automatically equate to an official endorsement of their mission, values and/or objectives. Wouldn’t it be obvious by YOUR COMMENT where you stand on an issue?

Third, what you’ve done by using your “hysterical toxin talk” above is EXACTLY what Mark was referring to in his article! You’ve made a “gross characterization” about a group of people who believe that toxins have contributed to autism -- all under the guise of “protecting your privacy.”

Over the years, "interviews" highly critical of vaccines with alleged retired pharma insiders have cropped up. Unfortunately, they have always been anonymous. I have always said when they were reported that they were useless, for the very reasons you cite in your excellent column. What can we possibly make of such revelations? Nothing, sadly.

"But unlike people that engage in the blogosphere using their real names and identities, these avatars all have one thing in common. They’re cowards."

I really beg to differ. We are not cowards. Many of us simply value our child's right to privacy. I have been on-line since the 90s and used to use my "real" name. My child can google; his/her school-mates can google. I don't want his/her name or our family name to show-up in anything related the hysterical 'toxic talk'.

So, not a coward, just someone who is protective and who values their child's privacy.

I was looking to buy a game for my son. Came across this interesting one on Amazon called Blokus Strategy Board Game and according to a mom who reviewed it -

"It also gets the brain working in non-traditional ways. You have to look at the grid in unique ways. The pieces aren't lined up in rows and columns like most games. You connect pieces by the corners. So sometimes you can connect a piece in an area that looks like it is totally bocked by your opponent."

The Gax genes is part of the class of genes known as homeobox genes. One of these, the HOXA1 gene, was a hot target in autism for a while. So Gorski makes his living doing genetics research? Good for him. Tha certainly helps frame the work of "Orac" in autism a bit more directly.

I would suggest that David go back and do a global "replace" of Gorski for Orac in all his web activities. I'm sure he's not worried about the impact that revealing his past work as "Orac" might have on his scientifc career.

David H. Gorski, MD, PhD is a surgical oncologist specializing in breast cancer and an Associate Professor of Surgery in the Division of Surgical Oncology at UMDNJ-Robert Wood Johnson Medical School and the Cancer Institute of New Jersey. An NIH-funded investigator whose primary research interests include tumor angiogenesis and the role of glutamate receptors in promoting the growth and metastasis of breast cancer, Dr. Gorski first became interested in pseudoscience and “alternative” medicine several years ago, when he wandered into the Usenet newsgroup misc.health.alternative and began critically examining the claims there. He has considerable blogging experience and looks forward to joining such an accomplished group of skeptical doctors to discuss evidence- and science-based medicine. Sadly, although he shares the same last name, Dr. Gorski is not related to Dr. Timothy Gorski, who is well-known as a skeptic and critic of dubious medical practices.

"In fact, at a deeper level, there’s a widespread pattern of scientific intimidation and censorship underway in autism science that relies on a wide range of attack dogs, from the wackosphere, to mainstream journalists to the leaders of prestigious government agencies and institutions."

It seems to me, that at a subconscious level, traditional medicine has come to the realization that the kind of medicine it practises is largely inadequate to serve the need of mankind today. Vaccinations, originally trumped as the salvation of mankind have failed to deliver the purpose for which they were intended. They have not succeeded in wiping out disease, they have only mutated the pathogens into chronic disease in the body and it is now called by various other names. Now that has got to rankle. The very premise of this body of medicine is at stake here. It is no wonder that it is so vociferous in its attempt to keep this crumbling edifice from biting the dust. These feeble attempts will fail because man is catching on, what it has done to our children and what it is doing to save face, will come to haunt it. The time is near. Very near.